Why the Formula Shortage Is a Disability Rights Issue, Too

The baby formula shortage wreaking havoc across the United States is terrifying for any parent who relies on infant formula to feed their child. It鈥檚 especially calamitous for babies and children with special health care needs who rely on special prescription formulas that have also been impacted by the supply shortage.

The shortage highlights an ongoing, systemic failure to ensure vulnerable children have secure access to medically necessary, life-supporting products and equipment. Families with healthy infants who had previously never experienced this level of stress over finding a product that should be readily available are now facing a situation that is sadly the status quo for families of children with disabilities.

This shortage鈥攑recipitated by a major recall of infant and pediatric formula produced by manufacturer Abbott Nutrition in February鈥攈as received major media attention, most of it focused on families who can鈥檛 find the over-the-counter Similac baby formula brand. Less attention has been given to the supply crisis in specialty prescription formulas like EleCare and hypoallergenic formulas like Alimentum (both also part of the Abbott recall). These specialized, medically necessary formulas are designed for children with gastrointestinal disabilities who can鈥檛 tolerate traditional formula. The shortage of these products affects not only babies, but also children and teens with complex digestive problems and allergies. This includes children fed through a jejunal tube (a feeding tube that bypasses the stomach and feeds the child directly in the small intestine); children with serious allergic conditions, like eosinophilic esophagitis or gastroenteritis; and children with intestinal malformations and malabsorption disorders.

The shortage highlights an ongoing, systemic failure to ensure vulnerable children have secure access to medically necessary, life-supporting products and equipment.

Very few companies make these specialty formulas. The EleCare recall has led to shortages across all available brands. What鈥檚 the alternative for these kids? There really isn鈥檛 one. If children transition to a standard formula, they risk further damaging their already fragile digestive system, serious illness, or death. They can be admitted to the hospital for feeding through a central IV line, but this is a major, invasive intervention that dramatically increases children鈥檚 risk of infection and serious medical complications. On top of that, the nutritional products hospitals use for this procedure are also in short supply.

Because specialty formula is only available by prescription, there is no easy way for families to seek out an alternative supplier. If the local grocery store is out of regular baby formula, you can drive to another store. With prescription-only formulas, many families are required by insurance to use only one supplier. If that supplier can鈥檛 provide the product, parents and their kids are out of luck. Even if families could buy specialty formula without a prescription, the cost would be hundreds of dollars for just a few days鈥� supply.

Low-income families are disproportionately impacted. The Women, Infants, and Children program, the federal nutrition aid for low-income parents, issues coupons to families that need to purchase prescription hypoallergenic formulas such as Alimentum. These families are required to buy a specific brand and size of product, and any changes require a physician鈥檚 signature. California鈥攁nd now the federal government鈥攈as relaxed these requirements and now allows families in the WIC program to purchase different sizes and brands without a prescription, and for stores to exchange recalled formula these families already possess. However, this requires every clerk at every store in the state to have read and understood the latest policy memo. From what I鈥檓 hearing in my discussions with parents, many clerks have no idea the policy has changed. This means children may be going hungry or parents may be risking their children鈥檚 health by switching to over-the-counter formulas with ingredients that could cause them to have painful diarrhea, skin rashes, and difficulty breathing.

Families with limited financial resources face numerous other disadvantages in the search for formula: They鈥檙e less able to pay inflated prices for specialty formula, drive to multiple locations to check stock, and make online purchases. In desperation, some families are trying to stretch the formula they can find by diluting it with more water. This is dangerous. Infants can have seizures due to electrolyte and water imbalances from diluted formula, and they can become malnourished.

At this point in the supply crisis, finding formula is a zero-sum game. For every family that secures a scarce can of formula for their child, another child will go hungry. I participate in several online support groups for parents of children with disabilities, where parents will often help each other out by sharing supplies. But as the shortage grinds on and the posts from families desperate for specialty formula multiply, offers to help have essentially dried up.

Much of the media coverage has focused on what families should do to manage this problem as individuals. This is deeply flawed. The formula shortage is a result of systemic failure, and there are no individual solutions. Children with disabilities and medical complexities simply cannot survive in a country where the supply chain for critical, life-sustaining products like specialty formula isn鈥檛 stable. President Biden has done the right things in the short term鈥攁ctivating the Defense Production Act to speed production and streamlining WIC rules for alternate purchases.

But families of children with special health care needs are weathering this formula shortage at the same time that they are weathering shortages in other critical, life-sustaining equipment. America sprang into action to fix the formula shortage when it started impacting healthy infants. We need the same energy and policy response to resolve the shortage of specialty formulas and other supplies for children with disabilities.

This column was produced in partnership with .

Jennifer McLelland is the California Health Report鈥檚 disability rights columnist. She also serves as the policy director for home- and community-based services at Little Lobbyists, a family-led group that advocates for and with children with complex medical needs and disabilities. She has a bachelor鈥檚 degree in public policy and management from the University of Southern California and a master鈥檚 degree in criminology from California State University, Fresno.